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Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
A brief history of my illness:
I have 3 children aged 1, 2 and 7 years. Looking back I have not been 100% well since the birth of my first child in 2002. During my last pregnancy I was unwell with and had tachycardia and sweating, once I gave birth by c-section, I had a 'funny' turn and have had several of these since. The 1st may this year I 'crashed' and have not yet recovered. I was in hospital for 7 weeks and did not recieve a confirmed dx. My symptoms were severe and included: tachycardia, sweating of extremeties, nausea, near faint, chest pain, palpitations, severe orhostatic intolerence, weakness, visual disturbances, sensory overload, hypoglycemia, low B12, low folic acid, low iron stores, low Vitamin D, headaches, adrenaline like rushes, internal shakiness. There are more but the above were the main ones. I was found to have coeliac disease, an adrenal tumour and tested positive on a tilt table test for Postural Orthostatic Tachycardia Syndrome (POTS). I have tingling on/off, facial numbness on/off, vocal hoarsness on/off, breathlessness on/off. I have inverted T waves, mild mitral and triscupid valve regurgitation, tested positive for antiphospholipid syndrome and had a low result for ceruplasmin (which has not been followed up and can indicate wilson disease). My adrenal growth has been looked at for functioning but in the urine test done this does not seem to be doing so. I am having it monitored for growth. Before I crashed I had recently recieved a Hep B vaccine and a B12 injection.
At the moment I only have a 'suspected' POTS diagnosis although I was being treated for this with betablockers and fludrocortisone. I have been trying to be refered to a specialist autonomic unit in London, UK but at the moment I am not able to do so. I see my neurologist again in November and will go from there.
My Gp has now mentioned ME to me and wants me to be assessed for this - I have now also learnt that Me and POTS can be present together.
I am a member of the dysautonomia (autonomic dysfunction) community which is a massive support to me at this time.
I have 3 children aged 1, 2 and 7 years. Looking back I have not been 100% well since the birth of my first child in 2002. During my last pregnancy I was unwell with and had tachycardia and sweating, once I gave birth by c-section, I had a 'funny' turn and have had several of these since. The 1st may this year I 'crashed' and have not yet recovered. I was in hospital for 7 weeks and did not recieve a confirmed dx. My symptoms were severe and included: tachycardia, sweating of extremeties, nausea, near faint, chest pain, palpitations, severe orhostatic intolerence, weakness, visual disturbances, sensory overload, hypoglycemia, low B12, low folic acid, low iron stores, low Vitamin D, headaches, adrenaline like rushes, internal shakiness. There are more but the above were the main ones. I was found to have coeliac disease, an adrenal tumour and tested positive on a tilt table test for Postural Orthostatic Tachycardia Syndrome (POTS). I have tingling on/off, facial numbness on/off, vocal hoarsness on/off, breathlessness on/off. I have inverted T waves, mild mitral and triscupid valve regurgitation, tested positive for antiphospholipid syndrome and had a low result for ceruplasmin (which has not been followed up and can indicate wilson disease). My adrenal growth has been looked at for functioning but in the urine test done this does not seem to be doing so. I am having it monitored for growth. Before I crashed I had recently recieved a Hep B vaccine and a B12 injection.
At the moment I only have a 'suspected' POTS diagnosis although I was being treated for this with betablockers and fludrocortisone. I have been trying to be refered to a specialist autonomic unit in London, UK but at the moment I am not able to do so. I see my neurologist again in November and will go from there.
My Gp has now mentioned ME to me and wants me to be assessed for this - I have now also learnt that Me and POTS can be present together.
I am a member of the dysautonomia (autonomic dysfunction) community which is a massive support to me at this time.
Here is a little bit about me and my journey:
After a viral illness in July of 08, I began to have vertigo like symptoms and migratory joint pain. In September of 2008, my symptoms took on a MS like nature. My most recent symptoms are:
1. LIGHT MIGRATORY TINGLING IN DIFFERENT PARTS OF THE BODY
2. NUMBNESS IN HANDS WHEN WAKING UP IN THE MORNING.
3. OCCASIONAL PAIN IN MY LEFT SHOULDER.
4. PAIN AT THE BOTTOM OF BOTH FEET WHEN WAKING IN THE MORNINGS.
5. RIGHT SHOULDER STARTING TO ACHE, LOWER BACK PAIN
6. RASH ON NECK THAT WAS PRESENT PRIOR TO ALL OF THIS. (-) ANA but elevated Sed Rate.
7. FLOATERS STILL IN RIGHT EYE - blurry vision as well.
8. INTERNAL TREMOR
9. TINNITUS IN LEFT EAR AND PULSATILE TINNITUS IN RIGHT EAR
10. LATEST SYMPTOM-FEELINGS OF HEAT AND COLDNESS IN BOTH EXTREMITIES, BUT MOSTLY ON THE LEFT SIDE.
I have had 2 brain mris(Sept 08)-both negative
EVP-October 08
LP-Normal with the exception of myelin sheath basic protein
bone scan-Normal (October 08)
cervical MRI-Normal(Sept 08)
ct scan of abd and pelvis (Feb 09)-normal
brain mri w/without contrast (Sept 09)-normal-absolutely nothing
cervical MRI- w/without contrast (Sept 09)-normal-absolutely no change
I have had a ton of blood work. I see my neurologist monthly. The only + blood tests that have come up include Epstein Barr titers (all 3) and low vitamin D level (which was treated for a total of 3 months up until March 09)
Igenix lyme test-Told that the test was slightly (+) and have been treated with abx's for the last 3 months. At this point, I am being told that I have clinical lyme by the LLMD. The neuro doesn't know or acknowledge anything about lyme disease because he doesn't know enough about it and thankfully doesn't pretend to. The ID doesn't have a clue about anything and laughed at everything. I have been to 3 IDs, 2 regular neuros, and 1 MS Specialist.
At this point, I am frustrated, scared, depressed, and not married to any diagnosis. All I know is that I would like to feel better and I have not felt the same since July of 2008. I am very grateful for this forum.
After a viral illness in July of 08, I began to have vertigo like symptoms and migratory joint pain. In September of 2008, my symptoms took on a MS like nature. My most recent symptoms are:
1. LIGHT MIGRATORY TINGLING IN DIFFERENT PARTS OF THE BODY
2. NUMBNESS IN HANDS WHEN WAKING UP IN THE MORNING.
3. OCCASIONAL PAIN IN MY LEFT SHOULDER.
4. PAIN AT THE BOTTOM OF BOTH FEET WHEN WAKING IN THE MORNINGS.
5. RIGHT SHOULDER STARTING TO ACHE, LOWER BACK PAIN
6. RASH ON NECK THAT WAS PRESENT PRIOR TO ALL OF THIS. (-) ANA but elevated Sed Rate.
7. FLOATERS STILL IN RIGHT EYE - blurry vision as well.
8. INTERNAL TREMOR
9. TINNITUS IN LEFT EAR AND PULSATILE TINNITUS IN RIGHT EAR
10. LATEST SYMPTOM-FEELINGS OF HEAT AND COLDNESS IN BOTH EXTREMITIES, BUT MOSTLY ON THE LEFT SIDE.
I have had 2 brain mris(Sept 08)-both negative
EVP-October 08
LP-Normal with the exception of myelin sheath basic protein
bone scan-Normal (October 08)
cervical MRI-Normal(Sept 08)
ct scan of abd and pelvis (Feb 09)-normal
brain mri w/without contrast (Sept 09)-normal-absolutely nothing
cervical MRI- w/without contrast (Sept 09)-normal-absolutely no change
I have had a ton of blood work. I see my neurologist monthly. The only + blood tests that have come up include Epstein Barr titers (all 3) and low vitamin D level (which was treated for a total of 3 months up until March 09)
Igenix lyme test-Told that the test was slightly (+) and have been treated with abx's for the last 3 months. At this point, I am being told that I have clinical lyme by the LLMD. The neuro doesn't know or acknowledge anything about lyme disease because he doesn't know enough about it and thankfully doesn't pretend to. The ID doesn't have a clue about anything and laughed at everything. I have been to 3 IDs, 2 regular neuros, and 1 MS Specialist.
At this point, I am frustrated, scared, depressed, and not married to any diagnosis. All I know is that I would like to feel better and I have not felt the same since July of 2008. I am very grateful for this forum.
Thank you, what a great idea. As all you have said I to am in Limbo Land. So I will try to give you a brief history. :)
I've been diagnosed with Myasthenia Gravis, which now Drs feel in incorrect. I have migraines and have for years. Also I have a diagnosis of CFS. 20 years ago or so I had autoimmune Hepatitus and with that came chronic pain, weakness and a right leg problem, I guess it drags, but I can control it if I can see my leg.(strange I know). My liver tests were abnormal for years, however the neurological problems evolved. I have a small left cer. infarction/lesion, which drs say is nothing note worthy. And "age related" white matter in the front left lobe of my brain.
Now I have amnesia at times, loss of balance, falling, weakness on my right side, hyper reflexes, slight positive Romberg's sign, areas of high t2 signal in my MRI(hope I got that right), myoclonus, sleep issues, jerking/twitching/tremor.
The liver they say is fine now. Blood work does not show Lupus.
In a few weeks I go to Mayo clinic, I really hope this will give me some answers, but am not convinced it will since it has been so many years with no answers already.
If anyone has any ideas or suggestions please let me know.
Together it sure makes this Limbo land a little easier...........
Tracy
I've been diagnosed with Myasthenia Gravis, which now Drs feel in incorrect. I have migraines and have for years. Also I have a diagnosis of CFS. 20 years ago or so I had autoimmune Hepatitus and with that came chronic pain, weakness and a right leg problem, I guess it drags, but I can control it if I can see my leg.(strange I know). My liver tests were abnormal for years, however the neurological problems evolved. I have a small left cer. infarction/lesion, which drs say is nothing note worthy. And "age related" white matter in the front left lobe of my brain.
Now I have amnesia at times, loss of balance, falling, weakness on my right side, hyper reflexes, slight positive Romberg's sign, areas of high t2 signal in my MRI(hope I got that right), myoclonus, sleep issues, jerking/twitching/tremor.
The liver they say is fine now. Blood work does not show Lupus.
In a few weeks I go to Mayo clinic, I really hope this will give me some answers, but am not convinced it will since it has been so many years with no answers already.
If anyone has any ideas or suggestions please let me know.
Together it sure makes this Limbo land a little easier...........
Tracy
Welcome on board Tracy.
Can I ask you what is autoimmune Hepatitis? I had hepatitis when I was 7 years old in Tripoli and was really sick. OH no need just found it on google LOL.
IF your liver is better then you would think the symptoms would have gone too, so it would look as though you have more than one thing going on, like a lot of us.
When you CFS do you mean M.E.? M.E. is now classed as a neurological disorder. There is a good link on the forum in the links thread all about M.E. and if you can get time I would read it as some of your symptoms could be M.E. M.E. is now becoming the disease of this millennium because the doctors have finally realised it has nothing to do with YUPPY FLU, but is a very debilitating disease in deed.
AMNESIA. I must tell you in January 2007 I woke up fine and decided to cut and dye my hair. I can vaguely remember cutting my hair but the next thing i remember is being fully dressed hair done and talking to my daughter on the phone and freaking out as I couldn't remember where i was, what day it was, year or where my hubby was.
I was diagnosed with transient global amnesia and would never want that again it is truly scary. They have no idea why i got that although at the time i did have a slight temperature.
If you can get time a read of the hummingbird link is worth it for M.E. as it is amazing stuff.
I am glad you decided to join us.
Have a lovely sunday. Big hugs Mariaxxx
Can I ask you what is autoimmune Hepatitis? I had hepatitis when I was 7 years old in Tripoli and was really sick. OH no need just found it on google LOL.
IF your liver is better then you would think the symptoms would have gone too, so it would look as though you have more than one thing going on, like a lot of us.
When you CFS do you mean M.E.? M.E. is now classed as a neurological disorder. There is a good link on the forum in the links thread all about M.E. and if you can get time I would read it as some of your symptoms could be M.E. M.E. is now becoming the disease of this millennium because the doctors have finally realised it has nothing to do with YUPPY FLU, but is a very debilitating disease in deed.
AMNESIA. I must tell you in January 2007 I woke up fine and decided to cut and dye my hair. I can vaguely remember cutting my hair but the next thing i remember is being fully dressed hair done and talking to my daughter on the phone and freaking out as I couldn't remember where i was, what day it was, year or where my hubby was.
I was diagnosed with transient global amnesia and would never want that again it is truly scary. They have no idea why i got that although at the time i did have a slight temperature.
If you can get time a read of the hummingbird link is worth it for M.E. as it is amazing stuff.
I am glad you decided to join us.
Have a lovely sunday. Big hugs Mariaxxx
Hi and thanks again for starting this group. It helps going on and seeing others having similar problems.
My Rhemy and Neuro decided that I have some kind of connective tissue/lupus thing going on because of my possitive ANA and a homo level of 1:640. I have brain lessions that I will have another MRI sometime this month. Have to pick the paperwork up at the doctor. The rheumy feels it will eventually all come out in the blood work. I don't know she wanted me to start taking plaquenil but I feel not having an official diagonsis that is a pretty heavy step to start that kind of medicine. So I still feel in limbo land but at least I found the two doctors that I will stay with and are willing to work together at getting me better or feeling better anyway.
Symptoms have been going on for years with early 20's having fatigue. 30's having a possitive ANA with the 1:640 level with intermittent joint pain. Some numbness in my hands and a small tremmor in my right hand. Carpel tunnel tests came back negative. Then numbness in my feet and front of my legs. Now last February everything hit the fan I was very fatigued for a few month and couldn't raise my hands above my head for long. Had horrible chest pain. Here is the list I came up with to take to the doctors to sum up what has been happing. Sorry for the long list but wanted to know who else has what symptoms.
joint pain (about 7 years)
back pain (since early 20's)
IBS (since 25 years old)
chest pain/rib pain that wraps around to back/ upper right belly pain
muscle pain in arms and legs with twitching---pinching feeling once in a while in arms
numbness in hands, legs and feet
fatigue
headaches/ringing in ears
sleeping problems/night sweats (about 2 or 3 years)
shaking or vibrating at night or napping (about 2 years) vibration on bottom of foot
blue flashing light in right eye with eye and orbit pain/eye twitching
dizziness occasionally
numbness and tingling in temple area/tip of nose tingling and itching
dry mouth and eyes/hazy vision up top and bottom/blurry/glasses not as good
hair lose (started last april 08)
right hand has tremor (about 3 years)
heart pvc's and pac's (about 8 years)
while turning head towards right got flashing and streaking lights in eyes/like going to pass out-only happend 4 times since july 08
A little history is in March of 08 I had a heart ablation for WPW and it failed due to the "bad signal" being to close to the main artery in my heart. Every since then I have had pvc's and pac's and have never really felt great since then. I was REALLY stressed out and freaked about the whole thing and I really thing everything started then. I just couldn't get a handle on it and was pretty bad emotionally.
So there are my symptoms in a nut shell. I started going to a therapist in January to try and get a handle on the bad feelings I was getting when my heart skips a beat. After 9 months with her I have decided to start an anti anxiety medicine Celexa. I have been on it for 2 1/2 weeks. I am hoping that will help with the anxietys of having all of this. I have an underactive thyroid and take synthroid and 12.5 mg of metroprol for heart pvc's
Thanks to everyone for letting me tell my story.
Hi just to add what i wrote on my message to you.
I have high blood pressure ish, and my doctor put me on propananol one tablet a day. I have since found out that a lot of neuros give this medication to people with MS as it helps tremors and it is also used for dysautomia (my brother is now on it).
It does help me i am sure with anxiety. Not sure if it does much for my blood pressure though LOL. Mariaxxx
I have high blood pressure ish, and my doctor put me on propananol one tablet a day. I have since found out that a lot of neuros give this medication to people with MS as it helps tremors and it is also used for dysautomia (my brother is now on it).
It does help me i am sure with anxiety. Not sure if it does much for my blood pressure though LOL. Mariaxxx
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